Momastory Series – A Guest Post from Deanna

Sometimes I just want to be a normal mom. I pretend that I am. I post blithely as though my two children are more normal than the normalist of normal (say that ten times really fast). I declare that I’m just like any other mother. I chime in on conversations as though my story is no different.

And yet, no one really takes me seriously unless I wear the hat “special” mom. I write long posts on being a new mother. A few people nod and smile. I scribble together a post on Down syndrome, and thousands of people salute and declare me to be some sort of expert.

Um, no. I am not an expert. I am just a mother. A normal mother.

I fight against the labeling. Especially when it comes with the tagline “you must have been SO special to have been chosen to be a SPECIAL mom”.

I look to myself and see nothing special. Nothing noteworthy. Nothing that would earn me the title “special”. And yet that word is there- before my name, after my name, between each letter of my name.

SPECIAL

That word carries with it such a stigma. Some pronunciations carry a negative inflection that might be followed by whispers of pity or looks of judgement. Others state it with admiration and “you are a hero” respect.

They call me special because of the specific special needs of my daughter. And even though I dislike my title, I wouldn’t trade my daughter for anything, so I hold my head high under the hat of “special” mom. But in my heart I know the truth. I’m as normal as that setting on the dryer. I didn’t sweep down in my cape and face mask to motherhood, nor am I being punished for crimes in a past life.

I’ve spent a lot of time contemplating what it means to be a special mom. And honestly to each special mom this title will mean something different because all of our children are different. Keeping that in mind, here’s my current take on the situation of being a special mom:

It means that you love your child unconditionally. It means that you fight for your child when necessary. It means you teach your child how to live. It means you deny yourself on a daily basis in order to give your best to someone else. It means you nurture even when it’s not convenient; comfort when there are tears; lecture when there is disobedience; praise when there are accomplishments.

Will there be moments when it’s hard? Yes, yes there will. But the truth is, I have moments like that with my son as well as my daughter. Having special needs doesn’t hold the claim on hard. It’s simply a part of life which means it is subjected to all the components of it- good and bad.

Is it so different in the journey of motherhood to be down the “special” path? Deep down we’re all the same. We want the same basic goals for our children. We beat ourselves up over silly mistakes and project a dim future because of them. We worry about safety and preach about being careful. We fret over the small and forget about the big. We remember what our dreams promised us and feel resentful that reality wasn’t as generous. We love and protect our children fiercely. We sacrifice whatever we have to give them a good life. We fight for them. We fight with them. We fight within ourselves for how we mother them.

I think that every mother has that certain something in her life that makes her “special”. That thing that sets her apart from all other mothers and that at times seems so difficult that she wonders why she has it worse than everyone else. It’s something different for all of us. Money, jobs, family, health, achievements, a child with delays, a child who is incredibly advanced, a child with health problems, a child with allergies, a child with behavioral problems, a child who makes bad choices, a child who doesn’t sleep, a child who- you name it.

So to me, saying “special” mother is like saying “mother” mother which really is ridiculously redundant. All of us are dealing with something because no matter which angle you look at that triangle of balancing life, there are sharp edges and hard surfaces.

We’re all normal, imperfect women trying to mother the best we can. We fight, and we struggle on different things, but we all relish that extra depth of flavor in the good when motherhood throws it our way.

As a special mother, I don’t want to be considered a saint or pitied because of unusual things that might be in my path. I want you to see me in the trenches right beside you, doing my very best with what I’ve been given in the gift of my children.

Motherhood isn’t easy for any of us. But at the end of the day, fighting through issues- both mundane and emergent alike- there’s a fundamental good that comes from the hard work of being a mother that makes it all unquestionably worth it no matter the specific details of our story.

That comes to you from a super normal mom who has dealt with a lot of health problems, delays, and stress in her motherhood career. And yet in my experience all of the hard of motherhood is washed away by a monsoon of love, leaving a clean slate available for important stuff like hand tracing, name spelling, and doodled drawings.

Call me a special mom if you must. I understand how that word might obviously belong to our family. But before you use that word as permission to set me up on a pedestal or throw me to the wolves, I ask you to remember that underneath that construction hardhat that declares SPECIAL is a uniquely normal mother, taking it one day at a time, raising little people to be kind, loving, thoughtful adults. Just like any other mother.

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Deanna is mother to two toddlers, writer to one blog (Everything and Nothing from Essex), and a long time avoider of anything resembling housework. Tripping through new motherhood (literally tripping- Duplos are all over the house) with two babies close in age, extra medical drama, and too much coffee (for her…not the children), she has learned and loved more these past three years more than she ever thought possible. Her latest thoughts on this new motherhood gig have been summed up in her new ebook- “Diapers, Onesies, Stretch Marks- Oh My!”

48 Comments

Had to comment because I loyally follow both of your blogs. Love to see these intersections. Awesome women seem to somehow find one another. Thanks to you both for putting yourself out here. It makes a tremendous difference to so many.

I have a four month old with DS and my husband and I have already been called special parents so many times. I am rather mixed about it but I know it annoys my husband. Your blog was spot on and made us feel less alone. Thank you!

I am the mother of a “special” little girl as well as two just as special children. A quote that struck a chord with me is this: “Motherhood is about raising – and celebrating – the child you have, not the child you thought you would have. It’s about understanding that she/he is exactly who she/he is supposed to be. And that, if you’re lucky, she/he just might be the teacher who turns you into the person you are supposed to be.” Joan Ryan, The Water Giver
Thanks for sharing your story Deanna! It was beautifully written!!

Deanna, I am so thankful Glennon shared you with all of us. She is generous in the very best way. I so appreciate your words on mothering, our children and each of their unique gifts. You have made me really stop and think about my narrow perceptions. I love when that happens. You have a new follower today!

I think you have a right to be whatever you want. Yes, you will face difficulties. They will be different from mine, but I will have them too. We all have unique children with unique needs and we all better be pretty darn special to handle it!

My son was recently diagnosed Autistic (PDDNOS — which I’ve learned will be classified as ASD in the newest DSM), and we’re moving through what that means for us. Of course, when you know something isn’t “right” with your baby, you go into Tiger Mode; you want to know everything about what he has, everything about what you can do, everything about what you need from others and the world to Keep Your Baby Safe. Frankly, I’m willing to do anything short of cut off my arms to make his existence in the world as best as it can be for him. But I’ve never thought there’s anything exceptional about that — it’s just what Mommies do. Thank God, most Mommies never have to, but I’m certain Mommies who are able, do. It just seems natural to me. How could it possibly NOT?

I have three children; 10, 8, and 4. We worked hard to recover my oldest son (now 10) from a diagnosis of autism (PDDNOS) at 2.5. Ten days after he began kindergarten no longer designated or with and IEP, I found out that his little brother (now 4) had Down syndrome. Three months later Seth entered our world. I don’t know, but outside of a lot of therapy hours, IEP meetings, and extra childproofing around my house, I don’t find having a child with DS much different. He is a love bug, talks up a storm, etc. Sure, he is more like a two year old, but it just seems like an extended stay at a younger age. I have been a “special needs” mom for almost seven years now, but I don’t know, just kind of feel typical. I have three kids that make my house look like a tornado struck it, would eat chicken nuggets every dinner if I let them, and love their family more than I thought possible. Thankfully Seth really hasn’t had any health issues. My girlfriend’s “typical” daughter died at age three from a heart condition. We all have issues. All have struggles. All need faith, hope, friendship, community, etc.

“I have been a “special needs” mom for almost seven years now, but I don’t know, just kind of feel typical.” THAT. That is exactly how I feel. When I first had my daughter, I felt extremely “special” and set apart as I dealt with all of the emotions that came with her diagnosis. But as life went on and I added my son and looked around at my super normal life, that’s when I could no longer pinpoint why I had to carry around that “special” title any more. Thank you for sharing your story!

And just to clarify- I think having my son is what showed me that what I had been calling “special” was really just “being a mother” as he was equally as difficult to care for- just entirely different ways.

What about those who willingly chose to not have that baby? What about those that were told they probably wouldn’t make it to term much less delivery. And if they made it to delivery, they would need critical heart surgery that they may not survive…and if they did survive, they would be severely affected from the cardiac defect that they would never be a “productive” member of society because in addition they already had downs…then what? Do you carry to term as best you can, knowing another sibling may need to take full responsibility? Honestly, I don’t know. After days of deliberation I tried to make the best (which equals the least traumatizing) decision for my family. Worst decision ever, never want to make another decision like that. The lines were blurred at best. Is this for the baby, or my family (3 other small children), or me.? I honestly still do not know the answer. But I have to believe that what I did was the most right out of so many wrongs. I just have to.

I don’t have any answers for you, but I am sending you so much love today. It sounds like this decision is still very difficult for you to recall, and my heart goes out to you. Love on your babies, know that what’s done is done, and look to the future with your family. I don’t know you, but I can feel your hurt through these words, and I send even more love your way. Love wins- even though hard things.

Christy – May you have peace. Sending you hugs. NO ONE can walk your path but you. Only YOU know the right decision for YOUR family. I spent too many years second guessing a decision and ripping myself apart and that did not help my family. Hang in there!

Thank you we are family. I have two daughters in their early 30’s now. My eldest has a form of Muscular Dystrophy, I always remember well meaning friends commenting “I don’t know how you do it” my response was alway “What am I going to do? I wake up everyday, whether it’s a good or a bad day is up to me ” I had always wished we had someone like us. I felt I could never share my daily ups and downs without throwing a wet blanket on everything. When I shared about some terrific digger that had just happened or a pile of plates that fell from weak hands. I didn’t want to be different, I just wanted to grumble, laugh or cry. How many times did the conversation just stop if I added some part of my day to it. I learned not to or only with my Mom or one or two girlfriends that could just let me be. My Mum always referred to the rest of us as plain people and my eldest as special. It is not an easy road, none of them are. There maybe more curves and serves on our path but the scenery is beautiful at times and bumpy at others. It’s all what you make it, “one day at a time.” XX’s

My son was looking at your daughter’s picture over my shoulder. He said, “what’s wrong with her?” without reading any of your blog. Sensitive to your topic, I asked, “what do you think?” He said, “I think she bit into that thing in her hand and it surprised her.” I’m thankful for all our children; each one is special and precious. 🙂

I can so relate to this. I have struggled with the same issues and it’s nice to hear someone else proclaiming these ideas. We’re not special because of what our children can’t do. We are special because our love for our children doesn’t depend on abilities or skills at all. I wrote a post grappling with these ideas recently and the points you made really hit home for me. Thank you!!!

Oh thank you so much for writing this. It was beautiful and completely touched my heart. One of my sons is currently struggling. I feel stigmatized at times for certain; I feel the judgement, I feel the pity. And all I want to say is, isn’t my son perfectly imperfect…just like the rest of us? Thank you for so eloquently writing what I have felt but been unable to state.

I agree there are quite a few similarities between parenting a child with special needs and one who is “typical”. Being a mom in any situation is a job with a lot of responsibilities and it stretches us I think more than any other role we have. As moms we desperately want the best for our children.

I only have one child so far, an amazing son born with a very rare syndrome who has some pretty extreme needs. I have found that in terms of what we face daily with our son, it is very different from my mom friends who have typical developing children. I can relate to them in more ways than they can relate to me. I have learned to go with it and understand that in those differences I have been given a unique opportunity to experience motherhood in a way that is indeed very special.

I do agree my role as a mom to a child with special needs is not one that should put me on a pedestal and the cliche “you’re special hence you were chosen” is one that bothers me. I didn’t choose this role, nor was it given to me because I am somehow different than other mothers. This role however has made me different than who I was before I had my son, and for that I am grateful for the beautiful way he has taught me to view and value life.

I do have to say though that I have came across some incredible amazing moms in the community of special needs parenting who display a strength, grace, and depth that is a direct result of their experience in their unique role as a mom to a child with special needs and I celebrate that about them, knowing the amazingness of who they are today is becauseof their uniquely special role they’ve been given in motherhood. I think it is a beautiful transformation and worthy of recognition and celebration, even if it means they’re set apart from “typical” moms.

I think its ok to have a distinction in the role of parenting a child with special needs vs a typically developing child, and not because one is mothering role is more special than the other, but because the roles do in fact have some very distinct differences and that’s ok, that’s just the way it is.

I couldn’t edit this after I posted in but if I could I would take out “even if they’re set apart from typical moms”. I don’t think it adds to my point and could make it misunderstood, so please ignore those words :-). All moms should be celebrated. And I also think its ok to recognize there are differences in the roles of moms with a child with special needs and while its ok to recognize those differences, one shouldn’t be celebrated more than the other. Hope that makes sense…and with that I’m off to start my sons g tube feed.

My kids are typical (typical in development and typical in the challenges they bring to me), but I have a couple friends with kids who have atypical needs. I think you expressed what I see in them very well. They are great moms, as all moms are, and they have changed and, I think, experience life a little differently because of their personal, unusual, experience of parenting. They’re not necessarily “better” people or moms than the rest of us, but they have had some unique experiences. Anyway, hope the g tube feed went well!

As a fellow gtube mom, I applaud you. It sounds like you are doing an amazing job. I too have met so many wonderful mothers of special needs children. I have also met many wonderful mothers who have gone through other trials that had nothing to do with special needs that shaped and molded them into incredible people as well. Having said that though, I do think the point you make about having a distinction between the two is a good one. No matter how much I fight the labeling thrust upon me, there will always be a difference there in my mothering career whether I acknowledge it or not. I just know from experience that other mothers feel that same difference even if they aren’t living under the same label. I appreciate you adding in your thoughts, and I love that you said that mothering a child with special needs has made you into a different person. You took the words out of my mouth on that one. (-:

Thank you for such an encouraging post, Deanna. Those of us with “normal” children often don’t feel normal as we muddle through the beautiful and often brutal vocation of motherhood. We need daily reminders to take things one day at a time, and that no matter how our children are made, they are all special because of who they are. And you are, too. From one normal-special mom to another, bless you as you raise those little people today.

How beautifully stated. People often make a big deal out of the fact that I cyber school my son because his school couldn’t deal with his food allergies, because I have to reinvent the way I cook because of my husband’s truly bizarre food allergies(yep, I’m also a “special” wife), because I have a load of health issues of my own that make some days a challenge. “Oh, that must be so hard.” “Oh, it takes a special person to do all that.” Yes, sometimes it is hard, but I’m not special, I just love my boys(and my healthy daughter, too!) – as you said – fiercely.

Thank you, Glennon, thank you for sharing Deanna with us! There are so many good “chunks” in Deanna’s piece here that I can’t just give one quote back and say “this is perfect”. I just love it all, every word. I love your Momastory sharing times! Big hugs..

I agree, no ‘special’ title needed. But a empowered mamma who protects their child and their rights, “special child” or not, is not simply a regular old mom. I do not find myself having pity for my friend because of the list of extras she has to do with her son. I do hold her on a pedestal though, because of the fight and drive she has to change the world to be more inclusive. She is a normal mother doing exceptional things. It sounds like you might be doing the same.

Thank you! (I HAD to read as my name is Deanna as well ;))
I especiallyneeded this reminder today:
“It means that you love your child unconditionally. It means that you fight for your child when necessary. It means you teach your child how to live. It means you deny yourself on a daily basis in order to give your best to someone else. It means you nurture even when it’s not convenient; comfort when there are tears; lecture when there is disobedience; praise when there are accomplishments.”

I honor and respect Deanna and her point of view. My favorite thing about it is that it acknowledges that kids with Down Syndrome are kids first, and have more in common with neuro-typical kids than differences from them.

But.

For me, my child with Down Syndrome is a whole different ball game than my child without. They are twins, incidentally, of the “Viva la revolucion” photo Glennon kindly shared on World Down Syndrome Day this year. And so mothering that child is a whole different ball game. My fears about him are a universe away from my fears for my other child. My stressors about his health and well-being are likewise a universe away.

I do very much agree with Deanna that I wasn’t “chosen” for this role because I or my husband have any “special” or magical superpowers. I think people like to think that because it separates them from us, as in, this could never happen to them because they are different than us. Life is crazy, you just never know which kind of crazy you’re going to get.

Great post. When my daughter with Ds was born, I kept saying to people “everything has changed yet nothing has changed’. I had my third beautiful and healthy child in my arms bringing her home to her brother and sister. For my husband and I, we were immediately ‘okay’ with Ds we just worried about how other people would react. And largely it’s still the same way. We walk a fine line of educating our family and friends and knowing when to keep our mouths shut and smile and nod. Love your blog!

I teach in a ‘special’ ed classroom, and I keep hoping for a better, more accurate, less precious term to make itself known to me. If I say an FSA classroom then I inevitably need to explain it and end up saying ‘special ed’ anyway, because that’s the term people know.

Deanna- you’re a warrior mama- as are all mamas, you just have some bigger battles to fight, and some steeper hills to climb, is all. Thanks for sharing your story. xo

Beautiful. I came to this site looking for inspiration in “motherhood” today and wow! Thank you to God for mothers who use their voice (and technology!) to encourage others!!! You’ve helped make my “mommy” title mean SO MUCH MORE TODAY! thank you! Keep on, brave mommy!

Yes yes YES! Sometimes one of the hardest part of raising a child with special needs is sorting through all of the labels that get thrust upon us. Especially love this, “We fight, and we struggle on different things, but we all relish that extra depth of flavor in the good when motherhood throws it our way.”
So love this!
xo
K